Hi I'm new 27 yr old stage IV

Lilmiss82
Lilmiss82 Member Posts: 257 Member
edited March 2014 in Colorectal Cancer #1
I've been reading many post for some time but was unsure of joining. But now I realize that you guys are so supportive of one another and I want to be part of this family too. I was dx on April 27 of this year. I have endured much of what many of you guys have already experienced such as chemo/ radiation for 6 weeks followed by surgery LAR and liver resection to remove 1 met and now I have began Folfox. I've only had 1 treatment Thursday will be my second. I just want to know in all honesty what is ahead on this journey. Please inform me as much as possible. At time I fear that I won't be able to handle 6 months of FOLFOX and wonder how you guys did it. Thank you in advance and look forward to meeting everyone:)
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Comments

  • jmaddox915
    jmaddox915 Member Posts: 80 Member
    #2
    One day at a time
    Hi Lilmiss82,

    I was dx in July 09 with Stage IV colon cancer as well at the age of 39. I had no symptoms and we actually found it by "accident". I feel like I was lucky as even though it had spread, it was not extensive. I had a spot about the size of a quarter on my liver and some disease in my lymph nodes around my abdomen.

    I had my 7th treatment on Folfox with 5FU today. Even though my last CT scan showed the spot of the liver is gone for the most part and my abdomen is responding well, I have to finish the 12 cycle plan and then go to maintenance with Avastin.

    This is a hard journey and even harder to accept when you are as young as you are.

    You can do this. I know it is hard. I hate my treatment weeks. For me, after I get my pump off, I go downhill for about 4 to 5 days. I feel very tired, nausated and I cry alot. However, the days after that before my next treatment, I make the most of feeling better. I remind myself to only focus on the 24hr for that day which is hard for me as I am a planner by nature.

    Getting this dx, has increased my faith in God. I pray every night that God will guide the researchers and doctors to find a cure for cancer and I pray and believe that by Jesus's strips he bore for me that I will be healed. It has brought our family closer and I cherish each and every minute I have. It has enlighted me to just how many people in my life that love me and have pulled together to help me fight this battle.

    I wish you the best and hang in there. Focus on you beating this because you can. God has a plan, I promise.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #3
    Hello & welcome to this
    Hello & welcome to this forum. I myself have not been posting for long, but I think you will find this to be a very supportive & thoughtful group. I can't answer your question regarding what to expect, but I know someone will be along to answer that soon. I think everyone's journey is different, with similarities & we are all fighting the same enemy. Take good care!
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #4
    Lilmiss
    Hello!

    Yep, you can do it! I'll be 59 this month and I completed 12 treatments with Folfox in mid August. I was a Stage III colon and had no radiation.

    Sorry you have to be here, but welcome!
    Diane
  • coloCan
    coloCan Member Posts: 1,944 Member
    #5
    Hello, Lilmiss82
    I've just finished second of nine does of FOLFOX and taking it day by day is a necessity. Each of us reacts differently to chemo.This is my seccond regime. I started with Xeloda(pill form of5Fu) and Oxy with radiation, then a colostomy and now FOLFOX which gets to me for about five-six days then I have 8 days til next dose.Watch out for tingling in toes/hands, nausea, fatigue, possible diahrrea and/or loss of appetite, mood swings, chemobrain-fuzziness where there used to be clarity,etc-. Also, when you begin chewing food you may feel a pain in your jaws, same when you drink. Watch out for cold/frozen food/drink as you should avoid such-ask doctor.Be positive in thought, as difficult as that might seem.You can make it thru this as the rest of us,one way or another,have. You're in a difficult battle but if you've read a little on this site, you'll see that there are many successful outcomes.......Steve
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    #6
    jmaddox915 said:

    One day at a time
    Hi Lilmiss82,

    I was dx in July 09 with Stage IV colon cancer as well at the age of 39. I had no symptoms and we actually found it by "accident". I feel like I was lucky as even though it had spread, it was not extensive. I had a spot about the size of a quarter on my liver and some disease in my lymph nodes around my abdomen.

    I had my 7th treatment on Folfox with 5FU today. Even though my last CT scan showed the spot of the liver is gone for the most part and my abdomen is responding well, I have to finish the 12 cycle plan and then go to maintenance with Avastin.

    This is a hard journey and even harder to accept when you are as young as you are.

    You can do this. I know it is hard. I hate my treatment weeks. For me, after I get my pump off, I go downhill for about 4 to 5 days. I feel very tired, nausated and I cry alot. However, the days after that before my next treatment, I make the most of feeling better. I remind myself to only focus on the 24hr for that day which is hard for me as I am a planner by nature.

    Getting this dx, has increased my faith in God. I pray every night that God will guide the researchers and doctors to find a cure for cancer and I pray and believe that by Jesus's strips he bore for me that I will be healed. It has brought our family closer and I cherish each and every minute I have. It has enlighted me to just how many people in my life that love me and have pulled together to help me fight this battle.

    I wish you the best and hang in there. Focus on you beating this because you can. God has a plan, I promise.

    thank you
    I too rely on my faith in God and believe that is why I am able to endure this. Cancer has allowed me to rebuild my faith and relationships with friends and family. We do not walk alone on this journey. I wanted to ask you why they didn't remove the lesion in your liver? Is it inoperable? I have read many post with people who have not had a resection and wonder if I should of just tried to have the chemo kill it first. My God bless you and your family.
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #7
    Welcome to the board
    Welcome to the board and I'm sorry to hear about your cancer dx. I'm not going to lie to you but this is going to be a rough trip but together we will get you through it. Just remember to take it one day at a time. Each day that goes by is one less day you'll have to spend having cancer. I was just told yesterday that I'm NED.... Someday you will be too.

    Life is funny sometimes
    Brooks
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    #8
    coloCan said:

    Hello, Lilmiss82
    I've just finished second of nine does of FOLFOX and taking it day by day is a necessity. Each of us reacts differently to chemo.This is my seccond regime. I started with Xeloda(pill form of5Fu) and Oxy with radiation, then a colostomy and now FOLFOX which gets to me for about five-six days then I have 8 days til next dose.Watch out for tingling in toes/hands, nausea, fatigue, possible diahrrea and/or loss of appetite, mood swings, chemobrain-fuzziness where there used to be clarity,etc-. Also, when you begin chewing food you may feel a pain in your jaws, same when you drink. Watch out for cold/frozen food/drink as you should avoid such-ask doctor.Be positive in thought, as difficult as that might seem.You can make it thru this as the rest of us,one way or another,have. You're in a difficult battle but if you've read a little on this site, you'll see that there are many successful outcomes.......Steve

    Thanks coloCan
    With my 1st treatment I was really anxious bc I had a real hard time with 5-FU when I had radiation over the summer. I was alittle more prepared but still unsure what FOLFOX would be like. So far the hardest part has been the nausea and fatigue that is most crippling. I made sure to notify my oncologist that I needed something else other than Zofran and she was quick to respond. It's great to have a good oncologist. Did you do calcium and mag to help with the hand and foot thing? Sorry for all the questions just happy to finally be able to talk to people who understand what i'm going through.
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    #9
    just4Brooks said:

    Welcome to the board
    Welcome to the board and I'm sorry to hear about your cancer dx. I'm not going to lie to you but this is going to be a rough trip but together we will get you through it. Just remember to take it one day at a time. Each day that goes by is one less day you'll have to spend having cancer. I was just told yesterday that I'm NED.... Someday you will be too.

    Life is funny sometimes
    Brooks

    Ned
    All I want and pray for is for everyone here to be NED:) congrats and thank you for your encouragement.
  • damama24
    damama24 Member Posts: 174 Member
    #10
    new
    I too have Stage IV colon cancer with mets to my liver. Right now I am only receiving chemo to shrink the tumors. I have 20 rounds of chemo left out of 26 so I'm new to this also. There are alot of people on this site that can provide you with information and hope so please stay in touch and ask questions someone will be ablw to help you with answers. I will add you to my prayers and keep you in my thoughts. Deb
  • coloCan
    coloCan Member Posts: 1,944 Member
    #11
    Lilmiss82 said:

    Thanks coloCan
    With my 1st treatment I was really anxious bc I had a real hard time with 5-FU when I had radiation over the summer. I was alittle more prepared but still unsure what FOLFOX would be like. So far the hardest part has been the nausea and fatigue that is most crippling. I made sure to notify my oncologist that I needed something else other than Zofran and she was quick to respond. It's great to have a good oncologist. Did you do calcium and mag to help with the hand and foot thing? Sorry for all the questions just happy to finally be able to talk to people who understand what i'm going through.

    Haven't taken anything,Lilmiss82,
    for tingling in toes and next two or so inches of bottoms of feet, which I didn't really notice until after surgery tho I probably had it while undergoing first round chemo but thought it was my calluses feeling funny(have bad calluses on bottoms of feet-for some reason was able to peel off deadskin real easy,don't know why). I'm sure there are meds available for nueorapathy (sp wrong)...Steve
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #12
    WELCOME :)
    Wow, you are so young to already be a Stage IV - I am so sorry that you have to deal with this so early in your life, but glad they found out and the attack is on and that you are moving through things.

    Over 5 years has been my journey with Cancer and it's hard to believe it's been that long. I can understand how you think the next 6-months will be hard to do, but they will pass. It will not be an EZ road, but the good things are not.

    Just keep your mind and body strong and understand as much about the disease as you can. Be prepared for other doctor opinions if things go south during any of your treatment. Many battles have been changed as a result of that.

    I'm recovering from lung surgery, but saw your age on the post and wanted to say WELCOME...so many fine folks here that can be of help at most hours of the day. So coming here was a very good decision and we look forward to getting to know you.

    I'll spare you my story, but if you click on my board name, you can read my profile. It will tell you how I got through it. If you ever need to talk, let me know.

    All the best and was nice to meet you BTW
    -Craig
  • geotina
    geotina Member Posts: 2,111 Member
    #13
    HI
    Hi and welcome to the board. We are also fairly new. My hubby (George) is Stage IV, multiple mets to liver and lungs. George just completed the full six months of the Folfox and Avastin treatments. He had scans 2 weeks ago and the news was good, as the onc put it, this is the best report we could have at this point in time. Some mets are gone, the rest show substantial reduction. George just started last week the weekly chemo cocktail of 5FU, Leucovorin adding Avastin every other week and in January we will see where we stand. George handled Folfox, he was able to continue working where many can't. Everyone is different. Fatigue hit him pretty hard but nausea was not a problem. He did get the neuropathy and cold stuff from the Oxy but all things considered did well. He even drove himself to and from treatments after the first few. His cancer was in the transverse colon. Any questions just ask, there are many knowledgeable people on here to answer your questions honestly. Take care - Tina
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #14
    Welcome
    I welcome you to the board but sorry you had to find us. I'm sorry you have discovered this at such an early age, but at any age cancer is not a good discovery. Like others have said we are a great bunch of people, caring, loving and very supportive. You will find here a new family, one you can come to whenever you feel down, or up, or just need a question asked. Believe me we have covered just about everything on this board so never be afraid to ask a question.

    I was on Folfox and to be honest, it was hard, but it is doable. You will probably feel fatigued and sick to your tummy after disconnect and then not feel good for 4-5 days. The more chemo you get the more it accumulates in your system and the longer the symptoms last. You can expect some neuropathy (numbness of hands and feet), but let your oncologist know if it is getting too bad for you because it can be irreversable if you let it go too long. Not to scare you, but it can happen, but look at Diane, she did all the months. Some people have to quit a little early and that happens too.

    They will probably do weekly blood tests as my white/red/platelets were so low I couldn't continue on treatment. They might wait an extra week or if that doesn't work they might give you a shot to boost your white/red counts, but it doesn't help with the platelets.

    My oncologist wouldn't give me the calcium and mag because she said it diminished the effects of the chemo but every doctor is different. I would ask your doctor what their thoughts are on this as Craig suggests that it helped him.

    Come here with your thoughts and concerns because there is always someone here to answer your questions any hour of the day. I wish you luck with your new journey. We are here if you need us.

    Kim
  • robinvan
    robinvan Member Posts: 1,012
    #15
    Welcome Aboard
    Hi Lilmiss,
    So sorry to hear about your diagnosis! Yes, you have endured much already! It sounds like your medical team has been right on top of it.

    What's ahead? Finish off your FOLFOX and then hopefully you will be free and clear of this beast! For good!

    We're with you all the way.

    Peace and Blessings... Rob; in Vanouver
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #16
    Welcome
    Welcome to the group. I'm so sorry you have to be here, but I do hope we can help you in so many ways. It sounds like you're going through a lot right now. Keep us posted!

    *hugs*
    Gail
  • Unknown
    Unknown
    #17
    This comment has been removed by the Moderator
  • sfmarie
    sfmarie Member Posts: 602
    #18
    How did you get this so young?
    Wow! I am sorry you have gotten this at such and at such an advanced stage so young. You will find inspiration, love, courage, and tons of advice and support on this board. You are young, strong and will get through this. As many many here, you can beat this! Stay strong, and keep up HOPE! I will be praying for you. My sister was dx stage IV at 39. She is still fighting this! Marie
  • jillpls
    jillpls Member Posts: 238
    #19
    check out the colondar
    Once you are through your treatments you should sign up to be a model for the colonder. It's comprised of young adults that have battled cc cancer. http://www.colonclub.com/colondar.html I've even met some of the models. They all have uplifting and encouraging stories. You will get through this even though it won't be fun but you'll be so much stronger after. God bless you and keep the faith.
    Jill
  • Shayenne
    Shayenne Member Posts: 2,342
    #20
    jillpls said:

    check out the colondar
    Once you are through your treatments you should sign up to be a model for the colonder. It's comprised of young adults that have battled cc cancer. http://www.colonclub.com/colondar.html I've even met some of the models. They all have uplifting and encouraging stories. You will get through this even though it won't be fun but you'll be so much stronger after. God bless you and keep the faith.
    Jill

    Welcome!!
    To a wonderful family, where everyone is welcomed and loved.

    I have not been on Folfox yet, I am Stage 4 on Folfiri, but, if I can do this, so can you!! I thought at first the chemo was going to kill me, but I am now on my pump as we speak, for the 16th time, and will be on this for maintenance therapy since my liver is inoperable right now.

    Lots of people on folfox here, even on Folfiri, once I'm disconnected, I get very tired for a few days, but then bounce back to me, where as soon as you start feeling good, BOOM! next treatment is here! Just bear with it, you can do this, Emend and dexamethasone worked for me for the nausea, very well! I don't get it anymore, saltines are good for it as well.

    I really wish you alot of luck, yes everyone is different on their journeys, but we're all the same in wanting to get better and love hearing when someone does! I know you'll be posting your story to us about what you're going through, and what you need to know, and we'll help you out the best we can!!

    Hugsss!
    ~Donna
  • dorookie
    dorookie Member Posts: 1,731 Member
    #21
    WOW
    I am just blown away at your age, I was 38 when DX with stage 3 cc, and I, and my doctors were blown away at me being so young to have this. Is there any family history of cc or any type of cancer? Since then I have seen far to many young people getting DX with cc.

    I went through surgery, radiation and 12 rounds of Folfox with only 7 treatments that included Oxy, had weird side effects so my ONC stopped the Oxy, my ONC was giving me the max on everything he was very aggressive, and I am thankful he was. Was clear for about 4 months then it came back, stage 4, had lung surgery and 8 months of chemo (Xeloda). Last month was my 3 month check up and I am now NED. I still have to live with some side effects, I have numbness and tingling in my left leg and foot, severe lower back pain, which I happen to think is from the radiation, but not for sure exactly.

    You are strong, and you have found the best support in the world right here on this site. I can honestly say I wouldnt have made it through without them. They have saved me from some really dark times, and I hope that you will come back here anytime you need to, to ask questions, to vent, to cry, to tell us your NED (we love hearing that)!

    We will be with you through this journey, you will not be alone...

    God Bless you
    Beth

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